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Discussion Starter #1
I kind of already posted something about Wegener's Disease in my introduction but I thought I would ask this way too.

I've been diagnosed with Lupus from my Rheumatologist. My family doctor, ENT, Pulmonologist, and Nephrologist also believe I have Vasculitis with a strong possibility of Wegener's. I've had a huge problem with my sinuses, lung infections (pneumonia) and blood in my urine. I also have asthma.

My frustration is that my Rheumatologist does not agree. She said I would be very ill if I had Vasculitis or Wegener's. My Nephrologist said that is not true that there are milder forms.

I'm under control, somewhat. I take Plaquenil and Mobic. I've also been put on Bactrim indefinitely (Nephrologist) to prevent problems with my sinuses and lungs. My Rheumatologist is considering starting me on Methotrexate if I fall back again or show more signs of inflammation.

Any help would be greatly appreciated.

Thanks!
Michelle
 

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Hello Michelle,

The constillation of symptoms is very typical for Wegener's Granulamatosis. It is one of the primary Vasculatides. True, there are milder forms, however in any case it still a very serious illness. Wegener's tends to progress (sometimes slowly, sometimes quickly) it does not come and go (in flares) like many other rheumatic disorders. Usually without treatment it is fatal. Treatment options in milder cases are high dose pulse cortisone therapy, followed by MTX or sometimes Azathioprine. In more severe cases therapy with Cyclophosphamide/Cortisone and then MTX. The good news is that with treatment most patients recover fully and go into remission. Most do not ever have a relapse, and when then the treatment would be repeated with same good results.

Most important for the diagnosis of Wegener's is the biopsy. This should be taken from a location (organ) that is affected (eg. Sinuses nasal mucosa, Kindneys, lung, or skin) another common finding (90% or more) is the presence of antibodies (anti-neutophile cytoplasmic antibody) to Peroxidase (P3) also shown as p-ANCA.

If you feel your rheumatologist is not taking this seriosly, you should by all means get another opinion, best from an Angiologist or immunologist.

Noticing that you also suffer from asthma brings up the possibilty of Chirgg-Strauss vasculitis (aka: Allergic eosinophillic vasculitis), this is also a small vessel vasculitis simular to Wegener's.

I wish you lot's of luck, and hope you are getting well soon.

LG
Monique
 

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I'm sure you've done a web search already for Wegener's, here is a nice brief synopsis of the condition:

http://dermnetnz.org/systemic/wegeners.html

Have you asked your rheumy why he disagrees with this as a possibility for your array of symptoms other than he thinks you'd be sicker if you had this? Have the most conclusive tests been done (skin biopsy looking for inflammation of blood vessels) and the ANCA antibody test? Many of the treatments are similar for the two diseases but treatment for Wegener's is usually much more aggressive.

Good luck to you - let us know how it turns out.
 

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Discussion Starter #4
Hi

Thank you for the info. I have tested positive for p-anca on several occasions (I forgot that part). I have also had a sinus biopsy which was in conclusive. It just showed non-specific inflammation. My lung doctor spoke with my kidney doctor suggesting a kidney biopsy. My kidney doctor would like to wait a bit on that.

I'll keep you posted.

Michelle
 

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Hi Michelle

:hello:
I have had Lupus since '96, the only person in my family with immune condition and in Oct '07 my brother was diganosed with Wegeners.
He went to see his ENT originally cos his wife could'nt stand his snooring anymore.
He got a sinus infection after that, had his sinus cleared by surgery and it all went down hill after that. He was never sick in 7yrs. He got nose bleeds that couldnt be stopped,headaces,tinnitus and finally has losted his hearing. If it wasnt for his ENT doc sending away his bloods he would still not have an idea what he had. His condition came on very quickly and has now tapered off with the help of a range of med including immunesupperents,steriods and anti-inflam's.

What i would say to you is keeping pushing as you know your body better than anybody and if you feel something is wrong then it is!! They told my brother that you can have Wegeners with Lupus and other Immune Conditions (it could be mild so masked with the Lupes) so keep on their back.

Wishing you loads of luck with your search.
Jo:wavey: :wavey:

 

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Discussion Starter #6
Wow!

Your brother's story sounds almost like mine. I never had problems either until my first sinus surgery. That's what put me in a downward spiral. Infection after infection. ****** noses every day!

I got a pneumonia shot in the fall of 2006. I had been on long-term bactrim then. I am a preschool teacher so my ENT kept me on it until the fall. He stopped me at the first frost (figured the germs would be better with being around small children) and five days later I ended up in the hospital with pneumonia! I was there for almost a week.

I was also on steroids for over a year and last fall (2007), after being diagnosed with Lupus, I was weened off when I started the Plaquenil. It was weird because it helped my asthma and no more ****** noses. I also had a second surgery (new ENT) last year, and that has really helped.

Along with some of the Lupus symptoms, I always have blood in my urine; mostly small but sometimes a large amount. This is why my kidney doc is concerned about Wegener's.

Anyway, I found out yesterday my new insurance does not accept my current Rhuematologist. I'm going to see a new one in May, referred by a friend with RA. Hopefully, he will be on the same page with my other docs. I will definitely be stressing my frustration! In a nice way, of course.

Thank you so much for your post.

Michelle
 
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